ivig side effects after 9 yrs.
AnonymousOctober 7, 2009 at 5:42 pm
Hi I am new to this forum but not new to CIDP. I was officially diagnosed in Dec 2001..but have had it much longer. I was very ill as a teen ager but they unable to diagnose at that time..they knew it was neuroligical but that was it. I was 16 and they wanted me to plan to live my life in a wheel chair. ( just what every 16 yr. old girl want to hear) I went into remission and said ” don’t call me I will call you ” I decided aif I did not think I was sick then I wasn’t. i went on to live a life..travelled , went to school , got married and had four kids. I refused to think of myself as ill. Fast forward 25 yrs…Single mum , teaching preschool and going to school fulltime. Sept 2001 the whole world changed one sept morning at the same time my world came crashing down. For 2 yrs. i knew something was up..fatigue, pain in hands and feet, weekness,constantly sick. By sept 2001 I was walking with a very strange gait. Just kept thinking I was too busy and in burn out..if I could just rest..
Praise God I have a good Dr. who had been keepiong an eye out onthings over 2yrs…when I could hardly wak and no longer drive, work or go to school I went back in. He was greatly alarmed tho not surprised. He sent me across the hall to a neurologist who ran all the usual tests..spinal, mri etc. He was stumped. One night while going over and over in my head what I remembered from my youth the word Polyneuropathy came through. My son googled it for me 9 no control of my arms at that point) came up with CIDP..the Dr. laughed at first ” do you know how rare that is??’ But he was game and did the nerve conduction tests..I was right!
I started IVIG right away and the results were immediate. I spent the good part of 2 yrs in a wheel chair..but slowly have regained my ability to walk drive and even work ( tho not in my field and only part time) It has been rough. I live in a small city in Northern British Columbia.My Neurologist who was awesome moved away and that left only one in town who does not beleive in MS never mind anything else and is known for sending his female patients to the psych ward when he cannot diagnose them. I have to travel 10 hrs to see a neurologist in Vancouver.. I am greatful for wonderful healthcare that covers all of the expenses..my treatments my equipment, my medication and home care when I need it. I now live on a pension from the govt’..not easy with four kids..
Sorry for the rambling I have only met one other person with CIDP and he moved back to vancouver. I am completely alone up here.
My reaction to the IVIG is changing..I have never taken it well..but we adjust until it works. I can receive it fairly well now with prendison and drugs it is the week after that is relly concerning me now. About four or five days after th infusion I can not get out of bed or wake up it is like I am drugged..tho I am not. Afew time I have been rushed in with asceptic meneigits. This week I have slept for 3 days..I do not eat ..I force myself to drink but I can not stay awake
My treatments are getting closer and closer together as they do not do all that they use to. I am unable to work ot have any kind of a life. I have spoken to my GP, about a plasma exchange neither he or the specialist is up with the idea..for one I would have to travel to Vancouver for it..I am getting scared that i will be back in achair and do not know what to do,,has anyone had this where the ivig reactions change and become less effective? I take prendisone for my tratrmnents as well as imuaran all the time.
I am 46 and feel like my life is over..3 of my kids are.
in college and I have one more to go and I worry I will be a burden to them
AnonymousOctober 7, 2009 at 6:47 pm
Hi & welcome.
How long have you been on the Imuran? Is there a particular reason why you are on it? Does IVIG alone or with the steroids not help?
I’m asking because I Googled Imuran & got this list of side effects:
“Nausea/vomiting, loss of appetite or diarrhea may occur. If these effects persist or worsen, notify your doctor promptly. Unlikely but report promptly: hair loss, unusual fatigue, stomach pain, joint or muscle pain, vision changes. Very unlikely but report promptly: yellowing of eyes or skin, darkened urine, unusual bleeding or bruising, unusual lumps or growths. In the unlikely event you have an allergic reaction to this drug, seek medical attention immediately. Symptoms of an allergic reaction include: rash, itching, swelling, dizziness, trouble breathing. If you notice other effects not listed above, contact your doctor or pharmacist.”
Notice the nausea, fatigue & muscle pain.
Imuran can lower your white blood cell count. I’m thinking that may be playing a role in the way you are feeling. It also may be too much for your body to handle steroids, IVIG & Imuran all at the same time.
Keep in mind, that I’m just a mom with no medical training & this is my best guess…which may end up being completely wrong.
Is there any way you can contact your old neurologist? Maybe he can speak with the new neurologist & help him/her come up with a better plan.
You may need to switch IVIG brands, switch to infused steroids &/or possibly stop the Imuran.
I personally would also be pushing for plasma exchange at this point but I’m not sure how safe it would be for you, if you are feeling so ill. But I don’t really know too much about PE either.
Keep us posted.
AnonymousOctober 7, 2009 at 6:50 pm
What a difficult spot you are in! I hope your kids do not see you as a burden. I hope you have the kind of relationship with them that you can be open with your concerns, fears, and needs.
I cannot offer you any advice. Just encouragement! Hang in there, and I will pray for you!
AnonymousOctober 7, 2009 at 10:48 pm
thanks for the responses. Imuran is an immunine suppressant verry commonly used for CIDP. I am on that regularly and have few side effects from it. So I know that is not the source of my problem ( have blood checked reguarly) After writing today did more research on asceptic menigitis and am pretty sure that is what is happening from the IVIG treatments. I amjhust not sure where to go from here. Have an appointment on Friday with GP and will set up to go back to Vancouver to see specialist.
It is very hard to not get discouraged. My children are understanding but I want thenm to just worry about themselves and thier futures and not thier sick mum
AnonymousOctober 8, 2009 at 12:45 am
It sounds like you could use a second opinion. My husband has CIDP and when live in the Greater Vancouver area. I would highly recommend asking for a referral to the Neuromuscular Disorder Clinic at Vancouver General Hospital. But perhaps that is where you see your neurologist? Unfortunately it does seem that certain individuals become refractory or intolerant to IVIG over time (this is what I have read). I’m not sure if that is what happening in your situation. Kelly has some queries about the Imuran which I think are very valid. I just read an article which I will quote from, “Some patients do not respond or become refractory or intolerant to these conventional treatments. Those who become unresponsive to therapy should be checked again for the appearance of monoclonal protein or other signs of malignancy. Over the years, small non-randomized studies have reported possible beneficial effects of various immunosuppressive agents. A Cochrane review concluded that currently there is insufficient evidence to decide whether these immunosuppressive drugs are beneficial in CIDP. When giving immunosuppressive drugs, one should be aware that some might even cause demyelinating disease. It is difficult to prove beneficial effects of these newer treatments since they have only be used in small groups of patients. CIDP patients can deteriorate during or after infections or improve spontaneously, making it more difficult to judge treatment efficacy.” The article was titled Newer Therapeutic Options for Chronic Inflammatory Dedmyelinating Polyradiculoneruopathy by Krista Kuitwaard and Pieter A. van Doorn and dated May 28, 2009. I’m not sure what other advice to suggest other than getting a second opinion. Hubby did that about two years ago and it was absolutely the right move. Just another comment, my husband is always tired and very lethargic for 2-3 days after getting his monthly IVIG–not to the extent that you describe but he does know that he doesn’t ever feel like taking on much for a few days after treatment. All the best in getting some answers.
AnonymousOctober 8, 2009 at 5:02 am
Having the aseptic meningitis alone will make you want to park yourself in bed and be served everything through a tube… I get IVIg weekly and typically spend 1-3 days a week where I sleep pretty much all day long in huge chunks of time, followed by 8-10 hours of sleep at night. I don’t eat, I feel sick to my stomach all the time, barely wake up enough to drink and want to scream more than usual at the pain of sunlight… which naturally encourages me to stay in bed until dark. If there were any justice in this disease I’d be the size of a Vogue model, however IVIg makes me blow up like a water balloon too. :rolleyes:
I don’t really know the cause of the “more than usual” fatigue following IVIg but I’ve always attributed it to the negotiations and maneuverings of IVIg vs. my own antibodies. At some point there becomes a detante, or compromise, or leveling of the playing field and the fatigue abates until the next round. During this little battle in my body I also have a rise in temperature up from my now typical 100.5 to 101.5 which also indicates to me that there is some seriously heat producing activity going on in my body. This is just my analogy for what is going on – a very simplified version at that but it comforts me when I can barely lift my head up to take a sip of water that things are happening and that’s where my energy is being focused.
Although the fatigue doesn’t start until a day or two after treatment for me I wonder if your extended delay of fatigue might be due to the prednisone. I know when I take prednisone it takes days for me to come down off of it enough to sleep through the night. I did take it a couple of times with treatment several years ago but I can’t stand the feeling prednisone gives me – all twitchy, restless and irritable – like I need any help with those! 😉
I have only been on IVIg for 3 years consistently, almost one year on the weekly schedule. After switching to the weekly schedule it was much easier to see my improvements after getting treatment – it’s hard to notice your foot is a little less numb when you feel like someone has stuck an ice pick in your eye… my side effects abated considerably after switching to the weekly schedule HOWEVER I have noticed within the last 2 months that they are getting worse again and I am not responding to the IVIg as much as I did 6 months ago. Its hard to say if this is a trend or a result of multiple colds this summer but I’m leaning more towards the trend aspect as I haven’t had a cold in 5 weeks now. One way I can measure how well the IVIg is working is how far I go downhill in my week off from IVIg… can I make it 10 days before symptoms start coming back or getting worse, or 11 days, or 8 days… at one point 8 months ago it took 13 days before the symptoms came back 😀 but then I had a run of illnesses that took a toll on me so I’m having to work my way back up to that.
Anyway, just wanted to let you know you aren’t alone on the fatigue train or on the “is this IVIg stuff still working for me??” bus either.:)
October 8, 2009 at 8:11 am
My 12 y/o son has cidp. His reaction to ivig was just like yours. We would get a loading dose every month over 4 days 2g/kg. I asked the doc to switch to every two weeks dividing the dose, so it would be 2 days every two weeks. He has not had a reaction since. As well, in my uneducated opinion, I feel the frequency of the drug allows for the titers to stay up. Abstracts suggest that frequency is more important than amount. My son was just like you, the reaction would be 4 days post infussion and he too would get the aseptic meningitis every time. You do not mention the type of ivig you get or if you premedicate. For instance, the powder for, s/d typically produces more symptoms.. Infussion rate is crucial. My son gets 35g over a 5 hour period. there is a formula that goes by weight. Administering tylenol, benadryl and aleve also was helpful. Infussion rate and spreading out would be my best suggestion in addition to a brand switch. Are you able to find out the brand you had before? We use Gammaguard liquid, many swear by gammunex for lessened reactions. octagam too is supposed to have lessened reactions.
About the imuron, you mention it works for you and you have been on it for a while, so you know your body best. however, there were a couple of people on the site who had to get off of it because they suddenly became deathly ill, one gentleman became septic. look up member Alice, she is following a protocol for analogus stem cell transplant and has had to take many other steps prior to the harvesting. Interstingly, in one of her posts, after receiving cytoxan, also an immunosuppressant, what she described was nothing short of miraculous in my uneducated opinion. She is taking a high dose to completely wipe out her system, perhaps the amount could be adjusted to fit your needs. Read her posts, perhaps they might offer you some ideas to discuss with your doc. Good luck to you.
Dawn Kevies mom
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